Tag Archive | hydrocephalus

Two Years Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. 🙂

Two Years

Two years ago today, I was in a hospital bed on day 2 of hopefully many more on bedrest. I was getting frequent visits from my medical team, consisting of nurses, doctors, specialists, maternal fetal medicine, my OB, and two people from the nicu. My OB was hoping to keep Little Miss Minion and I healthy enough to make it to 32 weeks. The maternal fetal medicine specialist (high risk doctor) gave us two weeks in a best case scenario, which would have put us at 30 weeks. I don’t remember who the nicu people were or what their positions in the unit were, but I remember the feeling of panic as they explained all the things they could do if Little Miss Minion had to come early. I remember words like resuscitation, breathing tube, ventilator, developmental delay, and prognosis. I remember thinking that there were an awful lot of people coming in and out of the room during the time the nicu people were with us. 
When Mr Minion went back to our house to grab more clothes and things, since we weren’t expecting me to be admitted the day before, I remember starting to have trouble reading my book. The words weren’t making sense. I read the same paragraph over and over before finally giving up. I sat in my bed, trying to ignore the uncomfortable straps of the monitoring belt wrapped around my stomach. I watched the numbers on my blood pressure readings slowly climb, trying to will them back down. 150/90, 175/95…my prepregnancy readings were usually around 110/70 or lower. One of the nurses came in to check on me and moved the monitor screen to face away from me. With nothing else to look at, I watched the line of the fetal monitoring contraception move. Every jump indicated that Little Miss Minion was doing well, moving around. After a while, the line seemed to be flattening out. I called the nurse, they did a bunch of stuff to try and get Little Miss Minion moving, and nothing worked. They called in an ultrasound team who did a biophysical profile on her. It’s a half hour ultrasound where they count how many times the baby moves and a couple other things. She didn’t move. I watched her heart beat, the only thing that moved on the screen. 

Soon after that, I suspect an urgent  conference of my medical team commenced and a few minutes later, I was on the phone with Mr Minion, who had gotten to the house and wanted to know if I had thought of anything else I wanted. The doctor came in, so I got off the phone. I remember him telling me that my blood pressure wasn’t responding to the magnesium anymore and that Little Miss Minion needed out. Tonight. As soon as they could prep me.
I called Mr Minion and told him. As I hung up, swarms of people poured into the room to get me ready. I continued to call and text people that they were prepping me for surgery and that the baby was coming. And the rest is history. 
Today, I watched my two year old daughter play with bubbles. She ran up and down the hall of our house, played in her sandbox, and drew on an easel with markers. Two years ago, I watched a blue screen descend in front of my face as a team of doctors and nurses saved my life and saved my daughter’s life. I watched as someone held out a tiny, tiny, tiny baby, her head engulfed in a newborn hat that was almost as big as she was, her skin purple and transparent. Everything I had expected was imploding before my eyes. 
Two years ago, our NICU rollercoaster ride began. It started with a stomach churning drop as our one pound, fourteen ounce preemie was brought into the world twelve weeks early. There was another drop over a cliff as she fought off gbs, sepsis, and meningitis. Things smoothed out as we turned the corner of what would be our halfway point. We shot down another towering drop as we found out about her brain damage and hydrocephalus. The subsequent surgery and recovery were bumpy. But then, we could see the exit. Eighty four days after starting this ride, we got off and started the rest of our lives. There are still bumps, potholes, rainy days, and times when we trip and fall. But the important thing is that we get up, dust ourselves off, and KEEP GOING. 
Happy birthday to my daughter, Little Miss Minion. I’m so happy I get to see you grow up. 

And the results are in….

We got the official report back from the NICU follow up developmental clinic. I was pretty optimistic about it when all I had were the preliminary numbers. I read it as soon as it came in the mail and it was even better than I thought. 

Here’s the deal: they do bunch of skills tests with Little Miss Minion and they score her on how well she does. It’s pretty much three hours of playing with her with various toys and equipment. Luckily, she’s a pretty easy going kid, so it usually goes pretty smoothly. 

The stats:

At the time of the evaluation, she was 22 months chronological, 19 months adjusted for prematurity. Since she was born three months early, we subtract those three months from her chronological age to give her time to catch up. So for these tests, we are “expecting” her to score closer to 19 months than to 22 months. 
The scores: 

Receptive communication: this is how well she understands things that other people say. Ex: we ask her to bring us something or to point to a particular object. She scored at 18 months, which falls into the “average” range. 

Expressive communication: this is how well she communicates with others. Ex: pointing to things that she wants, asking for food, toys, etc. she scored at 18 months (average) again. 

Gross motor: how well she moves the large muscles in her body. Ex: running, jumping, etc. She scored 18 months here as well, so average again. 

Fine motor: how well she moves the small muscles in her body. Ex: coloring, picking things up with fingers. She scored at 20 months here, which is still considered average.  

Cognitive: how well she interacts with her environment. Ex: figuring out how to find hidden objects, placing puzzle pieces correctly, etc. She scored at 21 months here, which is considered high. 

All in all, she scored at the Average category. That means that she is performing at the same level as other kids born on her due date. This is huge. The last part of the visit is a meeting with one of the neonatologists from the NICU where they discuss the general results. The doctor had to double check his papers because of her nicu chart. Little Miss Minion has hydrocephalus, which usually impacts some aspect of development, and she also has brain damage from the infection. So he was shocked that she was doing so well. His notes include this surprise as he states that her progresss has been very reassuring, given her history of sepsis, hydro, meningitis, periventricular leukomalacia, and four brain surgeries. 
The upshot of all of this is that she is well on her way to catching up!

NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!

Back to the NICU

Last night was the first part of orientation for the NICU parent support group. This is group of people who have had children in the NICU. They host dinners twice a month for current nicu families, visit parents on the antpartum wing, visit families in their nicu rooms, and generally try to make the nicu stay a little  better. They do fundraisers, which I have helped with, that allow them to do things like bring a dad to the nicu from overseas before his baby passed away.
Yesterday was the informal informational meeting. There were seven of us, plus the leaders. We talked about what the group does and then there was the “tell your birth story” part. Normally, this is the part where I kind of back away. It’s hard when your story is so far from the ideal and the other stories are what you wanted yours to be. This time, instead of cringing when someone complained about how fat they got and how they were so upset that they had to wait five minutes to hold their baby, I found myself nodding along as someone mentioned the to do list they had written out in the morning and found themselves being admitted to labor and delivery at 34 weeks when their water broke early. We laughed at the crazy stuff we said or did while we were on magnesium. We grinned when we remembered how the nurses called our babies  feisty or cranky or angry because it meant that they were fighting. There were many overlapping similarities, which is something I have not experienced when telling my story. 

After that, we were told that any of us who wanted to could take a walk through the nicu. None of us had been back through the doors since we had been discharged. The atmosphere of camaraderie shifted as we neared the doors. Everyone seemed to pull back inside themselves. We were buzzed in and I stepped into the nicu for the first time since August 3, 2015. Everything was the same. We scrubbed up at the same sinks. We walked down the hall, each of us pausing for a moment as we passed the various wings that our babies began their lives in. I got a glimpse of our first room, at the end of one of the long wings. We walked through the parent lounge, then entered the second half  of the nicu. I stood in front of the door to the room where we learned about hydrocephalus, the room where Little Miss Minion took her first bottle, the room we finally got to leave and bring her with us. 
I hope that I am able to help someone on their NICU journey. 

Preemie Christmas Parts 8 & 9

On the (eighth and) ninth day of Christmas, the NICU gave to me: nine dads kangarooing, eight moms a-pumping, seven monitors chiming, six nurses charting, five needle sticks, four brain surgeries, three minute scrubs, two blood transfusions, and a micropreemie in an isolette. 

I’ll start in order. I was super impressed with myself for thinking up day eight. The original verse is “eight maids a-milking,” and my verse is “moms a-pumping.” Lol. Anyway, pumping in the NICU is almost like a rite of passage for preemie  moms. I don’t even remember my first couple pumping sessions because I was so out of it on magnesium. My first memory of pumping contrasts sharply with what I thought my first time feeding my baby would be. I pictured me, in a hospital bed, relatively healthy and not sliced open, with my baby, as we both learned how to do this thing called breastfeeding. Mr Minion would be in charge of bringing me snacks and stuff. 

Instead, I got a hazy couple of days post-surgery, where I was confined to bed due to my epidural and magnesium. The very first time I actually remember pumping was at like three in the morning a couple days after Little Miss Minion had been born. I was on a very erratic medication schedule, since I spent pretty much every waking minute in the NICU, and my pain meds had long worn off. Looking back, this was a serious error on my part. When you are pretty much disemboweled, albeit gently, you want to remember to take your pain meds. Anyway, so I’m in agony, unable get out of bed by myself. Mr Minion and I tried to set the pump up in my bed, but the angle was wrong and I couldn’t change it because of the blinding pain. So he had to pretty much pick me up without opening my incision and help me hobble to the small couch he slept on. I was freezing and shivering aggravated both my incision and my back. I had been sitting and sleeping in pretty much one position for days now, so my back was very tight. I remember crying because I was in so much pain, and I was so tired and all I wanted to was sleep.

 The NICU had given us access to their Snappies, which are sterile milk collection tubes that hook onto any pump. They have measurements along the side, because everything that CAN be measured in the NICU IS measured. Where most books and things I had seen measured the amount of milk a baby needed in ounces, these containers measured in milliliters. I would pump and pump and pump and send off containers with five, seven, two milliliters. Mr Minion would come back from dropping them off and tell me that the nurses were so impressed with my output. He would also stop in and see Little Miss Minion during these midnight milk drops, and then report back to me with how she was doing. 

I remember being so determined to breastfeed. It was the only thing left of my “birth plan,” if you can really call it that. The nurses said she wouldn’t be big enough to even attempt it until she reached about 34-35 weeks gestational, so about a month and a half old. In the meantime, I kept pumping. Soon, she was mature enough to start getting my milk through a tube in her nose (nasogastric tube). They started her off with 2 mls every four hours. Then, they upped it to 4 mls. Then, 9mls. My milk supply stabilized and they started freezing it. Then they told us to start freezing it at home because I had an entire shelf in the freezer. One day, I was talking to one of the nurses about how afraid I was about my supply, because I still wasn’t making the amounts usually made by a full term mom. She laughed and walked me back to the freezer, where Little Miss Minion had three big tubs full of snappies. 
Kangarooing is one of the best parts of being a preemie parent. Kangaroo care is when the baby is placed on the chest of the mom or dad, skin to skin, and then lots of heated blankets are arranged over the baby to keep them warm. Kangaroo care is proven to regulate heart rate, breathing, and is the only way to really hold your micropreemie for the first few weeks. It can be a little challenging to work around tubes, wires, oxygen supports, but it’s pure bliss. It helps dads to bond, helps mom to produce more milk, and helps everyone to feel more like a regular family.  The first time Mr Minion and I each held her, it was in kangaroo care. 

Preemie Christmas Part 7

On the seventh day of Christmas, the NICU gave to me: 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micropreemie in an isolette. 

The chiming of the monitors is the background music to life in the NICU. After scrubbing in, we would walk down the hall to her “pod,” and check the mega screen tvs that held a realtime stream of every monitor in that pod for the nurses. We could see her heart rate, oxygen levels, blood pressure, and respiration rates before setting foot in her room. Sometimes, her section of the screen was quiet. But sometimes, there would be flashing lights and alarms, followed by an immediate sense of panic as we saw what the problem was. Perhaps her heart rate had dropped. Maybe she had forgotten to breathe again. Or, with our brains in hyperactive NICU parent mode, maybe she was crashing. Luckily, that never happened. 

The monitors in each room were linked so that any alarm would split the screen so all the nurses would always be in the loop. It also kept all the parents on edge, because the alarms sounded the same whether they were in your baby’s room or not. Some days, the pod would be quiet. Some days, it seemed like every baby in the place had conspired to set their alarms off in five minute intervals. Some days, you heard silence from your baby’s alarms while another baby set theirs off constantly. I remember watching the monitors one day, early on in our stay. Mr Minion had dropped me off that morning because I still couldn’t drive, so I spent sixteen hours a day there. Little Miss Minion had behaved herself that day, and her alarms were mostly silent, but I watched her monitor split several times an hour as another baby had a very rough day. I watched the blood pressure drop, I watched the heart rate drop, I saw apnea after apnea, and blood oxygen drops into the fifties, forties, thirties. At some point, I know I went down to the hospital coffee shop and got a frozen mocha and took a walk outside in the courtyard, because I was sure the kid wasn’t going to make it. I happen to know that he did make it, and he also happens to have hydrocephalus, caused by a brain bleed. 

One of the requirements to be discharged from the NICU is to go a week without setting off the alarms. Her nurses wouldn’t ever say specifically that she hadn’t set off her alarm as, as a kind of superstitious joke. They would just say that her room had been very quiet. 

To hear the sound that will haunt my dreams forever, click the link below. 

NICU alarms